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    • #19955

      Hey all! 

      Summer is quickly approaching and this year’s going to be a hot one! 

      Many of us with LEMS have heat intolerance, I know I do! 

      Almost passing out from the heat was one of my first symptoms. Months later I learned that it was due to my small fiber neuropathy caused by LEMS. In my case, my neuropathy causes me to sweat much less than a “normal” person. 

      Does anyone else suffer with this problem?

      Is your heat intolerance also caused by small fiber neuropathy?

      Have you had a discussion with your neurologist about this? 

      Do you have any tips/tricks to share with us about what helps you in the summer heat?

    • #19985
      David1949
      Participant

        I too suffer from heat intolerance with LEMS. I had the heat intolerance before I was diagnosed with LEMS. I remember telling my neurologist at the time about living in air conditioning and horrible sweating if I exerted any energy in the heat. This was part of his referral to the autonomic nervous system lab that was just the beginning of 7 months of testing that began my LEMS journey.

        My only solution is to hibernate in AC in the summer months. I look forward to additional responses in this thread.

        David

      • #19989

        @dpmitnick

        I’m sorry you struggle with this too!

        I actually have the opposite problem though, my sweat glands were damaged by LEMS so I don’t sweat much at all, I simply overheat!

        Both over and under-sweating are caused by dysautonomia though.

        Have you tried wearing a cooling towel around your neck or one of those wearable fans?

        Both might be options to help you! 🙂

      • #20004
        David1949
        Participant

          Ashley,

          I do use a portable fan and cooling bar, across the back of my neck, whenever I am going to be outside or exercising inside in warm weather.

          David

        • #20005
          David1949
          Participant

            Ashley,

            I do use a portable fan and cooling bar, across the back of my neck, whenever I am going to be outside or exercising inside in warm weather.

            David

          • #20068

            @dpmitnick

            That’s awesome! What is the cooling bar like? Was it easy to get? Do you find them to be helpful?

            • #20077
              David1949
              Participant

                Ashley … see response below to DC. I have been successful with mine for three summers.

              • #20074
                David1949
                Participant

                  Ashley,

                  I am very pleased with the one I got two summers ago:
                  <h1 id=”title” class=”a-size-large a-spacing-none”><span id=”productTitle” class=”a-size-large product-title-word-break”>Hands Free Neck Fan, BORKA Portable 360°Cooling Hanging Neck Fan USB Rechargeable Personal Mini Wearable Air Conditioner Fan.</span></h1>
                  It isn”t available on amazon currently but it may be elsewhere.

                  This is the closest I found to it and it is available on Amazon:
                  <div id=”title_feature_div” class=”celwidget” data-feature-name=”title” data-csa-c-id=”9evthu-ckdznj-9aqvks-6stcd3″ data-cel-widget=”title_feature_div”>
                  <div id=”titleSection” class=”a-section a-spacing-none”>
                  <h1 id=”title” class=”a-size-large a-spacing-none”><span id=”productTitle” class=”a-size-large product-title-word-break”>USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black)</span><span id=”titleEDPPlaceHolder”></span></h1>
                  </div>
                  </div>
                  <div id=”bylineInfo_feature_div” class=”celwidget” data-feature-name=”bylineInfo” data-csa-c-id=”bigi5c-n5pmii-o58cdh-nac0c0″ data-cel-widget=”bylineInfo_feature_div”>
                  <div class=”a-section a-spacing-none”>Brand: Eonthry</div>
                  </div>

                  • #20076
                    David1949
                    Participant

                      Ashley,

                      When I bought mine two summers ago I bought a product by Borka. It doesn’t seem to be currently available. This is the amazon link to a very similar product-

                      USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black).  Brand – Eonthry.

                • #20071
                  DCarpenter
                  Participant

                    I absolutely struggle with the heat, which exacerbates my weakness and fatigue. I tried to walk in heat and didn’t last a few minutes. I try to get out early, but tough to choreograph when meds kick in with walking early. I’ve thought about the neck fan but see mixed reviews about their effectiveness and placement— any feedback on brands? I have the profuse sweating symptom. Thanks for sharing information about this exasperating issue! Deborah

                    • #20075
                      David1949
                      Participant

                        This is vary similar to the one I have used for 2 years.

                        It is available on Amazon (prime day sale today).

                        USB Portable Air Cooler Mini Electric Air Conditioner Neck Cooling Fan (Updates Black).  Brand – Eonthry.
                        <div id=”bylineInfo_feature_div” class=”celwidget” data-feature-name=”bylineInfo” data-csa-c-id=”bigi5c-n5pmii-o58cdh-nac0c0″ data-cel-widget=”bylineInfo_feature_div”></div>

                    • #20141

                      @dpmitnick

                      Thanks for sharing that with us! I may have to look into getting myself one, especially since summers seem to be getting hotter each year!

                      @lemsdiscussion

                      Let us know if you ended up purchasing the fan and what you think about it!

                       

                       

                    • #20173
                      LUCIA
                      Participant

                        Me gustaria poder combatir el calor pero realmente el calor no es solo en el cuello sino que si voy con ropa de algodón debajo de la ropa me sale un eritema, una erupcion de piel roja inflamada que cede a la hora o hora y media pero que hace que cuerpo, brazos y piernas me piquen muchísimo hasta un malestar de dolor. y respiro mal. Tengo una fatiga continua y mucha debilidad.
                        Con el frio me dan calambres y me quedo rigida.
                        En ambos casos lo paso muy mal pero yo creo que este año con las temperaturas tan altísimas lo he vivido peor.

                      • #20198

                        Translation: I would like to be able to fight the heat but really the heat is not only in the neck but if I go with cotton clothes under the clothes I get an erythema, a rash of inflamed red skin that gives way at the hour or hour and a half but that it makes my body, arms and legs itch a lot to a discomfort of pain. and I breathe badly. I have continuous fatigue and a lot of weakness.
                        With the cold they give me cramps and I stay stiff.
                        In both cases I have a very bad time but I think that this year with the temperatures so high I have lived worse.

                        Hola Lucia,

                        I’m so sorry to hear that, I know the heat really flares my LEMS too. I am ready for fall to begin so we can have some relief. Every summer seems to get hotter.

                        Hola Lucia! Lamento mucho escuchar eso, sé que el calor realmente enciende mi LEMS también. Estoy listo para que comience el otoño para que podamos tener algo de alivio. Cada verano parece hacer más calor

                      • #20200
                        Roberta
                        Participant

                          I certainly have issues with being in direct sunlight and the heat. The weakness becomes pronounced and my legs feel like wet noodles!!  After almost passing out twice I discovered I was not sweating which caused the overheating. Fortunately I recover quickly after getting in the shade or cooler temperatures.

                        • #20201

                          @bobbi-lynn-berry

                          Thanks for sharing! It sounds like you and I experience the same problems in heat. I also get a rash that starts on my chest, cheeks/ears and eventually spreads to my upper arms. Have you ever experienced this too?

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